DATA REPORT on Cancer in Children and Adolescents in Massachusetts, 2000-2009
Massachusetts Cancer Registry, Massachusetts Department of Public Health – June 2014
Deval L. Patrick, Governor
John W. Polanowicz, Secretary, Executive Office of Health and Human Services
Cheryl Bartlett, Commissioner, Massachusetts Department of Public Health
Susan T. Gershman, Director, Massachusetts Cancer Registry
Massachusetts Department of Public Health
ACKNOWLEDGMENTS
This report was prepared by Richard Knowlton, an epidemiologist at the Massachusetts Cancer Registry (MCR). Special thanks are given to Annie MacMillan and Susan Gershman for their review of initial drafts of the report. Thanks are also given to consultant Nancy Weiss for her editing efforts. Thanks are given to Charlene Zion, Kevin Foster, and staff in the Registry of Vital Records and Statistics for providing the mortality data and to James West, formerly of the Division of Research and Epidemiology for providing the population data. Thanks are also given to Bertina Backus, formerly of the MCR, for her initial draft of this report and her statistical programs.
Massachusetts Cancer Registry Staff
Susan T. Gershman, M.S., M.P.H., Ph.D., C.T.R., Director
Bruce Caldwell, Research Analyst/Geocoder
Nancy Donovan, M.A., O.T.R., C.T.R., Cancer Registrar
Patricia J. Drew, C.T.R., Cancer Registrar/Quality Assurance Coordinator
Loi Huynh, Software Developer
Richard Knowlton, M.S., Epidemiologist
Ann MacMillan, M.P.H., Epidemiologist
Mary Mroszczyk, C.T.R., Geocoding/ Special Projects Coordinator
Jayne Nussdorfer, C.T.R., Cancer Registrar
Barbara J. Rhodes, C.M.A., C.T.R., Cancer Registrar/Death Clearance Coordinator
Pamela Shuttle, C.T.R., R.H.I.T., Cancer Registrar/Non-Hospital Reporting Coordinator
Hung Tran, Software Developer
Massachusetts Cancer Registry Advisory Committee
Lawrence N. Shulman, M.D. (Chair)
Anita Christie, R.N., M.H.A., C.P.H.Q.
Suzanne Condon, M.S.
Deborah Dillon, M.D.
Joanna Haas, M.D.
Carol Lowenstein, C.T.R, M.B.A.
Reggie Mead
Gail Merriam, M.S.W., M.P.H
J. David Naparstek, Sc.M.,C.H.O.
Larissa Nekhlyudov, M.D., M.P.H.
Al Ozonoff, M.A., Ph.D.
Paul C. Shroy, M.D., M.P.H.
Janet McGrail Spillane, RN
Ingrid Stendhal, C.T.R.
Susan Sturgeon, Dr.P.H., M.P.H.
The data in this report are intended for public use and may be reproduced without permission. Proper acknowledgement of the source is requested.
For further information, please contact the following:
Massachusetts Cancer Registry……………………………………………(617) 624-5642
Research and Epidemiology……………………………………………….(617) 624-5635
Occupational Health Surveillance…………………………………………(617) 624-5626
Bureau of Environmental Health………………………………………….(617) 624-5757
Cancer Prevention and Control Initiative………………………………….(617) 624-5484
Massachusetts Department of Public Health website……………………...www.mass.gov/dph
We acknowledge the Centers for Disease Control and Prevention for its support of the staff and the printing and distribution of this report under cooperative agreement 1 U58 DP003920-02 awarded to the Massachusetts Cancer Registry at the Massachusetts Department of Public Health. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.
TABLE OF CONTENTS
Page
Executive Summary………………………………………………………………………………… 2
Methods………………………………………………………………………………...…………… 4
Childhood and Adolescent Cancer Incidence and Mortality……………………………………….. 8
Incidence by Year of Diagnosis and Sex…………………………………………………... 8
Mortality by Year of Death………………………………………………………………… 10
Childhood and Adolescent Cancer Incidence by Age Group……………………………………… 11
Childhood and Adolescent Cancer Incidence by Race……………………………………………... 13
Specific Types of Childhood and Adolescent Cancers…………………………………………….. 17
Leukemia…………………………………………………………………………………...17
Lymphoma……………………………………………… ………...... 22
Central Nervous System…………………………………………………………………... 25
Tumors of the Peripheral Nervous System………………………………………………... 29
Malignant Epithelial Neoplasms………………………………………………………….. 30
Soft Tissue Sarcomas…………………………………………………….. ……………… 33
Germ Cell Tumors………………………………………………………………………… 35
Malignant Bone Tumors…………………………………………………………………... 37
Renal Tumors………………………………………………………………………………39
Retinoblastoma……………………………………………………………………………. 40
Hepatic (Liver) Tumors…………………………………………………………………… 40
Discussion………………………………………………………………………………………….. 41
Appendices…………………………………………………………………………………………. 43
Appendix I. International Classification of Childhood Cancer, 3rd Edition (ICC-3)……… 43
Appendix II. ICD-9 [*] and ICD-10* Codes………………………………………………... 48
Appendix III. Massachusetts Childhood and Adolescent Cancer Counts, 2000-2009……. 49
References ………………………………………………………………………………………….. 53
EXECUTIVE SUMMARY
Data Report on Cancer in Children and Adolescents in Massachusetts, 2000-2009 presents cancer incidence and mortality data from 2000 through 2009 for children and adolescents (birth to 19 years) who were residents of Massachusetts at the time of diagnosis. This report updates the Massachusetts Cancer Registry’s report, Childhood Cancer in Massachusetts 1990-1999, and provides information about the most common types of childhood cancer including differences by age, gender, and race/ethnicity. Time trends from 2000 to 2009 are analyzed and cancer- related deaths for both childhood (0-14) and adolescence (15-19) are detailed.
The decreased mortality rate of childhood/adolescent cancer has been one of the major success stories of medicine in the last 20 years.Although the overall death rate for these cancers did not decline significantly from 2000 to 2009, it did decrease significantly from 1990 to 2009 (see graph below for yearly death rates and the average annual change in death rate as indicated by the straight line). Consistent with national statistics, leukemia incidence rates increased significantly from 2000 to 2009. This increase was due in part to an increase in the rate of a specific subtype known as acute lymphocytic leukemia. As with overall childhood/adolescent mortality trend data in Massachusetts, the 20 year mortality trend for leukemia decreased significantly.
Public health and reports such as this one provide baseline tracking of the new cases (incidence) and mortality of diseases. Cancer is one of the top three reasons for childhood deaths. While progress is being made, continued surveillance over time for research and vigilance is needed to measure successes, and where there is opportunity to make an impact.
Data Highlights from the Report
· From 2000 through 2009, 3,001 invasive cancer cases were diagnosed among Massachusetts children and adolescents. The age-adjusted incidence rate of childhood invasive cancers declined non-significantly from 2000 to 2009 for both genders.
· Males represented 53.4% of all childhood/adolescent cancers and females 46.6%. The three most common cancers among males in this age group were leukemia (23.6%), cancers of the brain and central nervous system (CNS) (19.0%), and lymphoma (18.7%). Among females, they were leukemia (23.3%), cancers of the brain and CNS (18.3%), and malignant epithelial neoplasms (15.2%), the most common of which were thyroid cancer (8.0%) and melanoma (4.4%).
· Malignant epithelial neoplasm rates increased significantly from 2000 to 2009. Much of this increase can be attributed to a significant increase in thyroid cancer, likely due to better detection of smaller tumors (see Data Report: Thyroid Cancer in Massachusetts www.mass.gov/dph/mcr ). Significantly more females than males were diagnosed with thyroid cancer and the majority of cases occurred in the 15-19 age group.
· From 2000-2009, cancer was ranked the 6th most common cause of death for children ages 0-4 (75 deaths, 1.7%), the 2nd most common for children ages 5-9 (86 deaths, 23.2%), the 2nd most common for children ages 10-14 (94 deaths, 18.8%), and the 2nd most common for adolescents ages 15-19 (131 deaths, 7.5%). Of the 386 cancer deaths among children and adolescents, the three most common were leukemia (29.4%), CNS cancer (23.2%), and adrenal gland cancer (9.8%).
Childhood and Adolescent Cancer Age Adjusted Death Rates, 1990-2009:
Source: Massachusetts Registry of Vital Records and Statistics and National Center for Health Statistics. * Rates are age-adjusted to the US standard 2000 population for ages 0-19.
METHODS
Sources of Incidence and Mortality Data:
The Massachusetts Cancer Registry (MCR): All Massachusetts incidence data are provided by the MCR, which is part of the Massachusetts Department of Public Health (MDPH). The MCR is a population-based registry that began collecting reports of newly-diagnosed cancer cases in 1982. The MCR collects reports of these cancer cases from health care facilities and practitioners throughout Massachusetts. Facilities currently reporting to the MCR in 2012 include 65 Massachusetts acute care hospitals, 6 radiation centers, 3 endoscopy centers, 4 surgical centers, 19 independent laboratories, 2 medical practice associations, 4 radiation/oncology centers and approximately 500 private practice physicians. Additionally, the MCR has reciprocal reporting agreements with 25 states to obtain data on Massachusetts residents diagnosed out of state. Currently the MCR collects information on in situ (except cervix) and invasive cancers and benign tumors of the brain and associated tissues. The MCR does not collect information on basal and squamous cell carcinomas of the skin. The MCR also collects information from reporting hospitals on cases diagnosed and treated in physician offices when this information is available. Not all hospitals report these physician office cases, however, some hospitals report such cases as if the patients had been diagnosed and treated by the hospital directly. Collection of these data makes the MCR’s overall case ascertainment more complete. Some cancer types that may be reported to the MCR in this manner are melanoma, prostate, colon/rectum, and oral cancers. The MCR also identified and included cancers noted on death certificates that were not previously reported to the MCR.
To improve case completeness, this MCR report includes previously unreported cancer cases that have been discovered through death certificate clearance. This process identifies cancers mentioned on death certificates that were not previously reported to the MCR. In some instances, the MCR was able to obtain additional information on these cases through follow-up activities with hospitals, nursing homes and physicians’ offices. In other instances, a cancer-related cause of death recorded on a Massachusetts death certificate is the only source of information for a cancer case. These “death certificate only” cancer diagnoses are, therefore, poorly documented, and have not been confirmed by review of complete clinical information. Such cases are included in this report, but they comprise less than 3% of all cancer cases for the years covered by this report.
Each year, the North American Association of Central Cancer Registries (NAACCR) reviews cancer registry data for quality, completeness, and timeliness. For diagnosis years 2000-2009, the MCR annual case count was estimated by NAACCR to be more than 95% complete each year. The MCR achieved the gold standard for this certification element, in addition to six other quality and timeliness elements for each year during 2000-2009.
Childhood cancers are classified differently from adult cancers. Whereas adult cancers are coded first using the cancer origin or primary site and then by histology, childhood cancers are predominately classified according to histology or tissue type regardless of primary site. The International Classification of Childhood Cancer, Third Edition (ICCC-3), based on the histology codes used in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3), was developed to standardize the classification of childhood cancer cases.1
Case reports for 2000 were coded following the International Classification of Diseases for Oncology, Second Edition (ICD-O-2) and converted to International Classification of Diseases for Oncology, Third Edition (ICD-O-3); ICD-O-2 was converted to ICD-O-3 in 2001. Cases reported from 2001 through 2009 were coded following the ICD-O-3 system. All cases diagnosed in children and adolescents were then grouped into International Classification of Childhood Cancer, Third Edition (ICCC-3) categories. The ICCC-3 system groups ICD-O-3 histology and site codes into 12 categories. Although the ICCC includes some tumors of benign or uncertain behavior in its classification of central nervous system and intracranial and intraspinal neoplasms, those tumors are not included in this report, which focuses on invasive Massachusetts cancers only.
Surveillance, Epidemiology, and End Results (SEER): National data on cancer incidence are from the National Cancer Institute’s SEER Program, an authoritative source on cancer incidence and survival in the United States that collects and publishes data from registries in selected areas. The national cancer incidence data in this report include malignant cases from the 18 SEER areas (including Atlanta, Connecticut, Detroit, Hawaii, Iowa, New Mexico, San Francisco-Oakland, Seattle-Puget Sound, Utah, Los Angeles, San Jose-Monterey and Alaska, rural Georgia, greater California, Kentucky, Louisiana, New Jersey, and greater Georgia). SEER rates are presented per 100,000 persons and are age-adjusted to the 2000 United States standard population for ages 0-19 years. Please note that cases diagnosed in Louisiana from July to December 2005 were excluded as a result of Hurricane Katrina.2
Massachusetts Registry of Vital Records and Statistics (MVRS): Massachusetts death data were obtained from the MDPH’s Registry of Vital Records and Statistics, which has legal responsibility for collecting reports of deaths of Massachusetts residents.
National Center for Health Statistics (NCHS): National mortality data were obtained from the Centers for Disease Control’s National Center for Health Statistics, which collects national death data from individual state vital statistics registries. In contrast to national incidence data, mortality data include the entire United States.
Statistical Terms:
Age-Specific Rates – Age-specific rates were calculated by dividing the number of people in an age group who were diagnosed with cancer or died of cancer in a given time frame by the number of people in that same age group overall in that time frame. They are presented as rates per 100,000 residents and are cancer type and sex specific.
Age-Adjusted Rates – For most other MCR publications that focus on a specific cancer or cancers in the general population, age adjustment is based on 18 age groups (0-4, 5-9, 10-14, 15-19, etc. to 85+). The percentage that each age group comprised of the total United States 2000 population is multiplied by the age-specific rate for a cancer to obtain an adjusted rate. The age-adjusted rate for a specific cancer is derived by adding the 18 age group-specific rates into one age-adjusted rate. Age adjustment controls for age differences in cancer incidence. For this report, age adjustment was based on the first four age groups (0-4, 5-9, 10-14, and 15-19). The population percentages of each of these four groups were derived from the US 2000 population. From this derivation, age-adjusted cancer rates for 0-19 year olds were calculated in the same manner as the age adjustment for the 18 age groups. Age-adjusted rates can only be compared if they are adjusted to the same standard population.
Joinpoint Regression Analysis of Cancer Trends – The annual percent change (APC) =100*(em-1), where m is a slope of the linear regression line, which is an approximation of the function of the natural logarithm of the rates by the year of diagnosis. The APC is a linear approximation; therefore, it may not give an accurate picture of long-term trend. SEER provides software to calculate the number and location (in time) of points where trends change direction (joinpoints).3 At each joinpoint, the trend may change in different ways. The joinpoint regression model describes the trend as a sequence of linear segments between corresponding joinpoints so that each segment has an associated APC positive trend, negative trend, or no trend.